ALS

[kit4]

Hi, my name is Kit. I am new to this forum and I am looking for answers for my condition. My story began 2&1/2 years ago with severe fatigue. Thenwhen laying in bed at night I started experiencing SEVERE cramps in my front upper thighs. Then I developed tingling sensations and multiple twitchings on my entire legs. The pain was so severe and my legs swelled and my joints hurt also. I lost my job during this time. I ended up in the ER 8 times and was hospitalized. I had a rash on both feet and a biopsy confirmed psoriasis. I was so weak that I had to be carried. I was sent to a rheumatologist who diagnosed me with psoriatic arthritis-which is very similar to rheumatoid except that is runs in patients with psoriasis I was put on 15 mg of methotrexate, folic acid and naproxyn. My blood test had confirmed a VERY ESR level and my white blood count was very high. I started to feel better within 3 weeks.
Over the period of the past 2&1/2 years, I continued to have mild to moderate muscle cramps, twitching, creepies,sweeping waves of numbness all confined to my legs. I was sent to a neurologist who checked me for ALS and MS,had MRI of head and spine also with flare which seemed okay. My father had ALS and it does make me wonder. The thing that eases my mind about having ALS is that I do not have the drop foot or wrist,and my symptoms are on both sides. I had an EMG done on my legs. The results were nerve damage to both legs with the right leg having more nerve damage. The neurologist diagnosed me with myositis. When I went back to my rheumatologist he said that my symptoms were from the arthritis and to just trust him and cancel my next appt. with the neurologist. And so I did.Feet were fine during this time. Kept complaining to my rheumy that my symptoms were getting worse. I was blown off each time. My last trip to the rheumy left me feeling lost as his nurse told me that my symptoms were not related to the arthritis. How upset this made me. After being told for over 2 years that they were, and now I feel lost. And then I got even worse.
For over the past couple of months, The muscle cramps, tingling, and numbness have moved into both arms, and cramps have hit lower legs and feet. Also, I get nump creepies on the right side of my face. I have twitches and occasional pain in eyes, had 3 episodes of the room spinning,and I was actually falling(these occured over the past 6 months),My legs feel like someone has tied bricks on them on some days. My arms too feel very weak and hard to keep lifted as they feel tired and burny for no reason. I also have felt shaking sensations deep in arms a few times. I feel warm spots on skin for no reason, also cold wet sensations on legs, cold needles in my legs, my legs go numb from my feet up to my knees occasionally. I have felt like I had a bandana tied around my upper ankle and when this sensation stopped, my foot went numb. I have the muscle cramps in the bottom of my feet also. One night I felt as tho my hands were crossed when they were not. Very unusual. I do not have diabetes.
I have done the online diagnosis to get an idea of what COULD be going on. The first thing up is perephial neuropathy The second is MS- and then others that deal with the spine or spinal ingury but this has been ruled out I believe by the MRI's. I went into my family doctor and he is sending me back to the neurologist. My appt. is the 8th of this month.
Also, I had joined the National Psoriasis Foundation over a year ago, and my symptoms are UNLIKE others that have been diagnosed with Psoriatic Arthritis. I have not had joint pain or swelling since I supposedly came down with this disease and do not believe I even have PA.
Please, if you have any information or advice, I would surely appretiate it as I and my family are very concerned at this point.

[kaydee]

Hi,
My father also died from ALS. Your symptoms are simliar of what I am suffering from. I also thought I had ALS. I went to a neurologist and did an EMG on my arms and legs. He said alot of it was coming from my spine. Then had a MRI done on my spine. I have Degenerative Disc disease. Have already had a disc repaired. You should go see a neurologist. H/she wil rule out any other disorders.
I also suffer from Chronic Fatigue Syndrome, Chronic Pain. Go back to your primary and go from there.
I also had a rhuematologist and because I suffer from Fibromyalgia he would not treat me. Go figure, he mostly deals with people with arthritis and rhuematic diseases. I understand your fears because I also feared that I had ALS. I went to alot of doctors before getting a dignoses of Fibro, CFS, CPS, DDD, spinal stenosis, etc, etc. Take care and I hope everything works out ok for you.
Kaydee

[kit4]

Hi Kaydee. Thanks so much for replying. I had a MRI with & without contrast about 2 years ago and they show me my MRI's. They said that my discs were very good & plump. Should I demand another? I do not have any pain in my spine or back. Just tingling over 2 years ago. This is one place the cramps have not hit. What scares me is that I had the cramps in the right side of my throat one night. They hurt! Especially as the throat is such a sensitive area.
Thanks again & my very BEST to you, Kit

[kaydee]

Hi,
I would also ask for an MRI on your head. You might have MS. I am not a doctor at any rate. I have a friend that had some of your symptoms and she turned out to have MS. You should see a neurologist, he/she will determine what is going on. This is nothing to screw around with. Something is going on. Find a doctor that will "listen" to you. I went to too many doctors and ended up with a chiropractor that is helping me some. Have you thought of seeing a chiropractor? It wouldn't hurt <pun not intended> to see what they say. They do an x-ray of your spine and an exam. Go back to your doctor and say I need to find out what is going on. Ask about going to some specialists.
Also reading things on the computer makes you more scared and make you wonder if you have ALS. I know I did.
It took years to find out what I have. I wouldn't get better, but I hope to stabelize. I also lost my job becasue of this. Also going for disability from Social Security and from my company. I worked for 34 yrs, and now I am disabled. I worked hard in a mill setting and now I am paying the price.
I hope I answered some of your fears. You can email me anytime, I will answer.
kaydee

[kit4]

Thanks sooooooooo much again Kaydee. I see the neurologist the 8th of this month. I am sorry about your illness. You mentioned you worked in a mill? My father worked his whole life in a saw mill. I worked in a wood shop...lots of sawdust flying. I wonder if theres a link of some kind hers as I have heard of several cases of ms & als where mill work or wood was involved. Just a thought.
I will keep you in my prayers. Thanks again, Kit

[kaydee]

Good luck with this doctor. I hope for your sake that they find out what is wrong. Click on the MS on the left side and read about the symptoms. Alot like ALS. Anything can trigger this. Just hope you don't. Let me know what they say. Keep good thoughts and pray to your guardian angel. Prayer does work wonders. I believe in angels. If it wasn't for my son's guardian angel they won't of found the cancer he has. Hodgkin's. One more year and it would of been too late. He is doing great and has 6 more treatments to go. Take good care of yourself also.
Kaydee

[ladybug2]

hi,well it sounds like you have went through alot of crap,and your rheumatologist should never have told you to cancell your appointment with a neurologist in the first place,thats not his place to do so.if you felt you needed to go to one then he should have been supportive and said ok to let you see what you could find out,it is apparent that he is not doing anything to help you or you would not feel the need to go to him in the first place.with every disease every one will experience symptoms differently,i have bulbar onset als and i have had alot of symptoms that others with the same thing have not had,but that does not mean that they have it and i don't or the other way around.even with ms people have different symptoms,depending on your own body,thats what makes us all different,so that does not mean you don't have als,or ms go to your neurologist and if you don't like the answers he gives you find another one till they can help you.i have had to deal with my problems for over 3 years now and the dr's made me feel like it was all in my head,i kept coughing every time i ate and drank anything,and one thought acid reflux another thought asthma,i went through over 12 doctors before i found the right one to do an emg nerve velocity test on me,and thats when we started getting down to finding the real diagnosis.i had 3 surgeries in the middle of finding out the problem in the past year and so i know where you are coming from.i wish you luck and my prayers go out to you.i hope you have family and friends to help you and depend on,i have a wonderful husband and 3 kids and family and friends ,but sometimes you still need to talk to people that are going through the same things you are....keep in touch...wanda